Philosopher Friedrick Nietzche said “Without music life would be a mistake”.
Even at 20 years old, country music star Chelsea Stepp is wise beyond her years. She shares a common bond with siblings of autistic brothers and sisters. She has learned from the school of hard knocks and is fighting back with music.
Hers is a sound of pain and promise, as she tells the story for her sister “Beautiful Blessing, Beautiful Curse”. How poignant and passionate a message can be delivered to the world (watch video):
You mean what you say, just can't say what you mean
Bottled up inside your head, and bursting at the seams
Trapped inside a world that's all your own
Your thoughts roll in like waves crashing on the shore
Time is ticking, time is ticking, time to pace the floor
Back and forth to find the place where you belong
Beautiful blessing, beautiful curse
Things could be better, but things could be worse
Give me your heaven, give me your hurt
Beautiful blessing, beautiful curse
Music has great power. Nietzche didn’t know how true his words would mesh into my life….
I started playing concert piano as a child; my parents made me. I learned from the best; a concert duo, Loretta and Murray Dranoff. As Mrs. Dranoff tapped my shoulder with the fierce staccato of Für Elise, Beethoven was seared into my brain.
Forty years later, I was reading an article in the NY Times: Coming Full Circle. Reporter John Leland told the story of a nursing home and how residents participated in a full-time program of Montessori-based activities designed for people with memory deficiencies.
The program was created by Cameron J. Camp, an experimental psychologist who has applied childhood education principles to people often considered past the point of teaching. A common misconception about people with dementia, Dr. Camp said, is that they no longer learn. But they do: residents learn to find their dining room table, for example, well after the onset of Alzheimer’s disease. And because they no longer have the higher brain function they had as adults, he reasoned, they are well suited to Montessori.
My eyes scanned the article and I stopped. There she was, Loretta Dranoff, a resident, now featured in this article. My tough and feisty piano teacher was suffering the effects of dementia. A tear rolled down my cheek in reminiscence, but she came alive with the same music that had consumed her life.
The key to working with someone like Ms. Dranoff, Dr. Camp said, is to build on the skills she has retained — writing, reading, playing the piano — rather than letting her deficits limit her life…
I have always believed in the power of music. It is a compelling force, like a charmer breathing life into the day or igniting memories long past. It was the fruit of my labor during the hellish days of early autism. When our son Paulie could not reconcile his fears or compulsions, I would sing, and sing until a quiet calm would embrace him. Those were times of exhaustion I sang to him when he woke up in the morning, I sang to him during meals, in the bath, on the deck, in the park, at the beach. I sang to get his attention, a glimpse or a smile was my compensation. I earned it, like a beggar for a meal. What I wanted to do was cradle him, and protect him from a future with autism.
The impulse remains. Even now, when he cannot articulate his frustrations, I simply want to sing to him.
I have yet to meet an individual with autism that did not respond to music. There may be some out there, but maybe they haven’t heard the sounds of beautiful Ethan Walmark, 8 year old boy, who just happens to have autism. He is an inspiration. Music has given him wings and opened the doors to a world of social spontaneity, a quest for all parents with autistic kids. He makes us want to join in his chorus and fly.
I suppose the thread that binds all of us is to find our own music and make it work for all of our children. They are the heroes. As Chelsea Stepp writes:
Act like I understand, but if I told the truth
I couldn’t stand as tall if I were in your shoes
Everyone needs a hero, and here you are